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concerned dad
08-27-2009, 10:38 AM
Well, I haven’t been around much recently but we had our follow-up appointment with my daughters’ doctor.

Just a quick history – She was diagnosed 10 months ago at age 14 with a 38 degree curve. A local doctor said she needed to be braced and wanted to put her in a Boston Brace for 2 years. She was braced briefly in Jan/Feb with the SpineCor but did not achieve a significant inbrace correction.

One of the things that bothered me about my daughters’ situation was the assessment of her maturity by way of Risser; she was Risser 0 at diagnosis however almost 1 year post menarche and had already grown 6 inches taller than my wife. We live near a large metropolitan area with several SRS doctors. We sought a doctor who was not only an SRS physician (suggesting a focus on scoliosis) but also knowledge of skeletal maturity indicators. We were fortunate to find one 80 miles away, indeed this fellow writes many papers on skeletal maturity and, in my opinion, is the perfect doctor to assess my daughters somewhat unique circumstances. (As an aside, he used to practice at a Shriners hospital and used to offer the SpineCor. He is now participating in the Braist trial). We decided in the spring after consultation with this doctor (and incorporating the information about her skeletal maturity based on her hand xray) to “watch and wait”. Yesterday, we went to our appointment with great anxiety (even more so after reading Sharon’s post).

In any event, we went into the consultation room after she had her xray. The doctor soon followed along with a student (intern? Resident? I don’t know, it is a university/teaching hospital). After talking with us about how things are going he pulled up her recent and (many) past xrays. Her curve now is 36 degrees – essentially the same as at diagnosis.

We chatted about what that implied and I pointed out that “had she been wearing a brace” ….. he finished my sentence “we would have attributed the stabilization to bracing”. He went on to say that the goal of bracing is to stabilize a curve and she appears to have a stable curve.
He suggested we come back in a year.

Had we followed our first instincts and listened to the first doctor we saw (who seemed like a competent fellow) my daughter would be wearing a Boston Brace right now (and for another year). After seeing how miserable she was wearing the SpineCor for just 6 weeks I can’t imagine what her life would have been like.

I am not suggesting that bracing doesn’t help or that folks should use our isolated case history as reason to abandon bracing. I am just offering our experience as food for thought. I am saying though that the issue is complex and we don’t know enough yet to be sure we are making the right decisions. In our case, it looks like we spared my daughter the burden of bracing and still achieved the results one would hope for by bracing.

I am indebted to ALL the forum participants here who helped me wade through the issues and literature. In particular those formerly braced folks who helped me understand that bracing is not a trivial path to follow. Sure, I would have "slept better" knowing (hoping) I was doing everything possible to help my daughter but instead I bore the burden of potential guilt and spared my daughter the burden of wearing the brace. Some may say I gambled with my daughters health. I would say I made an educated decision based on available information with no guarantee of a particular outcome.

As we were leaving the exam room I overheard our doctor say to his student …… “There is a reason I am skeptical about bracing”

Ballet Mom
08-27-2009, 11:12 AM
CD!

I'm so happy to hear about your daughter's result! I have been praying this summer for her and hoping that the Spinecor incident would not have any effect on her. That would have been unjust. I am thrilled that her curve appears to be stable.

As for the doctor who made the skeptical comment about bracing, I would question his judgement, as obviously, your situation shows absolutely nothing about the efficacy of bracing. It shows that your daughter was fortunate that she was already probably physically mature when the scoliosis was diagnosed. I think your case and others on this forum show more of a problem with using Risser scores versus other measures to determine skeletal maturity. Of course, there's a reason they use Risser versus other methods which is to reduce radiation exposure.

Anyhow, great news CD, I'm very happy for your daughter's result. :)

concerned dad
08-27-2009, 12:18 PM
Thanks for you thoughts and prayers.

I think you may have misunderstood his statement. He suggested the watch and wait approach because he determined my daughters skeletal age was advanced not because he is anti-bracing. He does brace some of his patients. But, in my daughters case, any efficacy of the bracing would be diminished due to her skeletal maturity.

I believe that, if pressed, he may have clarified his comment to his student by saying “there is a reason I am skeptical about the bracing literature”.

My daughter would have fit all the inclusion criteria for a bracing study.

So, when you say


as obviously, your situation shows absolutely nothing about the efficacy of bracing.

you are correct, but it does say something about the bracing literature.

Perhaps this goes to the whole issue of the Braist study. Anyone whose reads my posts over the past 9 months knows I’ve flip flopped all over the place on the topic. Any doctor who participates in the trial must believe that there is a significant doubt about bracing efficacy. That is to say, they recognize the limitations of the current evidence.

If they believed bracing didn’t work, they would be unethical participating in the trial because they would brace 50% of the kids.
If they believed bracing did work, they would be unethical because they would NOT brace 50% of the kids.
The only way they could ethically participate is if they felt that the issue was unresolved based on the current literature.

concerned dad
08-27-2009, 01:23 PM
And I have to be careful about putting words in a doctors mouth

Ballet Mom
08-27-2009, 03:27 PM
CD,

I think maybe my questioning your doctor's judgment was a little overreaction. :) I am very sensitive to these doctors and their bracing biases.

I think we can all agree that the bracing studies are extremely limited in their usefulness. I do not agree that the solution is to not brace children (i.e. the Braist study) who would have what appears to be a 50% to 80% chance that they would respond to bracing treatment of some sort if they were braced. As I have stated before, I believe the Braist study is unethical. And I believe there are ways to design studies that don’t require putting children at risk of major spine surgery unnecessarily.

Perhaps orthopedists should be x-raying the hand of those patients who are a year post-menarchal when diagnosed, in order to help some patients avoid bracing completely if those patients are shown to be more skeletally mature than what their Risser sign would suggest. That could be taken into consideration in regular bracing studies . So could physical attributes such as being overweight or having spinal flexibility that would be very beneficial knowledge for doctors to determine whether patients would respond to bracing or not. So could the sensors be used in regular bracing studies to determine brace use that does not put children at risk. I think much knowledge could be obtained while avoiding putting children at risk like the Braist study does. I’m sure the medical research community is well-attuned to creating studies that try not to put patients at risk as I would guess many, many diseases and conditions would be unethical to not treat the patient with current best practices. I think scoliosis is one of these conditions.

There would also be a lot more interest in participating in the study, if all children were to be treated in the study. I know that I would never put my child in that study, I would hope that most other parents would also feel the same way.

My daughter is almost nine-months post menarchal and she is still showing improvement in the look of her back with her night-time brace and working with her ballet teacher on posture. I don’t think anyone could tell at this point that she has scoliosis. Even her right scapula that was more pronounced than her left one has resolved to the point of being absolutely equal to the left in prominence. Perhaps she is very unusual, but maybe researchers should be looking at the success stories of bracing and determining what it is about those cases that makes them successful.

Sorry my response is so slow, but my son is heading off to college tomorrow and I’m having to run and take him to doctor’s appointments, etc. Wonderful that one of my kids is flying the nest! :)

Pooka1
08-27-2009, 04:19 PM
Very excellent news, CD! I'm very happy for you and your daughter.


Anyone whose reads my posts over the past 9 months knows I’ve flip flopped all over the place on the topic.

I would say you are open-minded and evidence-driven. That is a very good trait. Your daughter is very obviously lucky you are that way.

Hopefully she is out of the woods or will soon be so.

Best regards,
sharon

concerned dad
08-27-2009, 05:02 PM
Going off to college, it must be an exciting time in your home.

Look, the Braist study is an interesting but dangerous thing to discuss.
It is interesting because it involves science and ethics.
It is dangerous because we who are discussing it here have a personal stake in scoliosis. Whether we admit it or not, we have biases based on our own life experience. Too often here at NSF intellectual disagreements turn personal.

Having said that, what the heck …….:D

You say



I do not agree that the solution is to not brace children (i.e. the Braist study) who would have what appears to be a 50% to 80% chance that they would respond to bracing treatment of some sort if they were braced.

But don’t forget the statement from the 2007 paper discussing the followup to the (now recognized as flawed) SRS bracing study. They ask (emphasis added)

As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily. One major question is as follows: is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

If my kid were one of the unfortunate 10% I would probably say, yeah, you bet it’s worthwhile. But, if my kid was (and I think she may be) one of the 90% I would say, heck no.

A parent of a braced kid today has no way of guessing what group they are in. Maybe advances in DNA testing will help. Maybe the results of the current brace trial will help our grandchildren.

Ballet Mom
08-27-2009, 09:00 PM
CD,

All I can say is, I'm glad my daughter wasn't sacrificed in the name of science. I'm also glad things worked out for your daughter, I was not questioning your decision not to brace, obviously your daughter was at a stage where it was reasonable to decide not to, due to her maturity and discomfort with wearing one.

Pooka1
08-27-2009, 10:41 PM
As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily. One major question is as follows: is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

If my kid were one of the unfortunate 10% I would probably say, yeah, you bet it’s worthwhile. But, if my kid was (and I think she may be) one of the 90% I would say, heck no.

A parent of a braced kid today has no way of guessing what group they are in. Maybe advances in DNA testing will help. Maybe the results of the current brace trial will help our grandchildren.

If 70% were perhaps unecessarily treated and only about 10% are saved from surgery (at least at the point of maturity), then that leaves about 20% are bracing failures.

And that is for AIS I assume. Scoliosis associated with connective tissue disorders may be a whole 'nother ballgame. I found one paper of a small (uncontrolled) study of bracing kids with Marfans claiming about a 20% chance that bracing avoids surgery as for AIS.

http://www.ncbi.nlm.nih.gov/pubmed/10984787

CONCLUSIONS: The success rate for brace treatment of Marfan scoliosis is 17%, which is lower than that reported for idiopathic scoliosis. Possible reasons include increased progressive forces, altered transmission of corrective pressure to the spine, and younger age at inception of bracing. Because there was no control group, it is unknown whether bracing slowed curve progression. Physicians should understand that most patients with Marfan syndrome who have a curve of more than 25 degrees and a Risser sign of 2 or less will reach the surgical range, even with brace treatment.

My kids have not been diagnosed with Marfans but one has a diagnosis of hypermobility. And they both fell into the category referred to in the last line of the Conclusions section quoted above.

That said, it's one uncontrolled study and, as such, has a high chance of being false. Nobody knows.

leahdragonfly
08-27-2009, 11:13 PM
Dear CD,

I've been missing you here lately. I am really thrilled to hear that your daughter had good news today, that's wonderful that she doesn't have to be checked for another year.

As you know I completely respect each parent's choices for treatment of their child's scoliosis. I think over the past year or so you did a tremendous job educating yourself and trying to understand the issues surrounding treatment of your daughter's scoliosis. It takes courage to "go against the grain" and decline bracing, but I think in many cases it can work out. I've been rooting for your daughter! And as a formerly braced child who found bracing to be personally pretty devastating, I have a unique perspective on this that others may lack. I personally have a really hard time with the possibility of overtreating 70% of braced children. It is not a benign treatment by any means. The more scientific evidence we have to guide treatment, the better. So I am glad things worked out well for you and your daughter. She is lucky to have such a caring and involved dad.

Now please don't leave us high and dry here. You are a great addition to the discussions here.

Take care,

Snoopy
08-28-2009, 07:01 AM
Physicians should understand that most patients with Marfan syndrome who have a curve of more than 25 degrees and a Risser sign of 2 or less will reach the surgical range, even with brace treatment.

My kids have not been diagnosed with Marfans but one has a diagnosis of hypermobility. And they both fell into the category referred to in the last line of the Conclusions section quoted above.

Sharon,
My daughter doesn't have Marfans either, but she too falls into the same category as your girls. We've always thought because of the rate at which her Scoli progressed and the degree of her Kyphosis, that there is an underlying cause, which we believe is CMT (Charcot-Marie-Tooth). We put Jamie in two different braces, which she just would not wear. Like you, I agreed with her decision to not wear the brace and I don't regret that decision. I know she would have progressed with or without a brace. Makes me wonder just how many kids with underlying causes needlessly wear a brace.

Mary Lou

Pooka1
08-28-2009, 08:09 AM
Sharon,
My daughter doesn't have Marfans either, but she too falls into the same category as your girls. We've always thought because of the rate at which her Scoli progressed and the degree of her Kyphosis, that there is an underlying cause, which we believe is CMT (Charcot-Marie-Tooth). We put Jamie in two different braces, which she just would not wear. Like you, I agreed with her decision to not wear the brace and I don't regret that decision. I know she would have progressed with or without a brace. Makes me wonder just how many kids with underlying causes needlessly wear a brace.

Mary Lou

Mary Lou,

Your last point haunts me. I think there should be more effort to try to identify the cases that might not be AIS of the sake of these kids.

I think the speed of curve movement might be used by some surgeons. Savannah's curve moved 5* a month (on average) for every month she was under observation. There was never any talk of bracing her. I haven't seen another testimonial like that (that speed over that amount of time) here at least. How fast did Jamie's curve move? Based on your comment, I'm guessing faster than the average testimonial here.

Willow's curve was stable for 6 months prior to the brace and then moved 8* while wearing the brace nightly. Again, I don't recall another testimonial like that. Willow's curve moved between 3-4 degrees a month over the last 6 months (on average). That adds up fast.

I found part of one discussion in a book (the next page wasn't shown) that started out with something like... while scoliosis associated with connective tissue disorders is sometimes held in brace during brace treatment due to flexibility.. and then ended. I am guessing they go on to say ... when they come out of brace, the curve continues to progress.

My kids have squirrelly spines. I accept that now. I am very grateful to have run into two surgeons who choose not to brace one and who only went with a night time brace with the other just just to try. He said he never would have put her in a 23 hour a day brace. He also doesn't think she has Marfans but the geneticist seems to think we should do yearly aortic monitoring for that.

I am glad I involved Willow in all this. It was her decision to keep wearing the brace after I said I didn't think it would matter. I LOVE that she didn't just blindly follow my thoughts at that time just as an exercise in independent thinking. And it was her decision to stop wearing it when it stopped fitting. It gives me hope I have raised a skeptical, critical thinker. :)

concerned dad
08-28-2009, 09:02 AM
He also doesn't think she has Marfans but the geneticist seems to think we should do yearly aortic monitoring for that.


If it turns out that she does have Marfans her scoliosis would have been a blessing in disguise as it may have provided a critical clue to compel you to monitor for something much more dangerous.

Gayle, Thanks for your kind words. And thank you for sharing your life experience here which helped me make my decision. Were it not for yours and Pams (and others) contributions to the discussions my daughter might be wearing a brace now. The personal burden of wearing a brace may be difficult for a parent to fathom.

BalletMom, I know you werent questioning my decision (although it would be OK to question it, I sure did). We wouldnt participate in the Braist trial either but I dont fault those who do. In retrospect, had we caught my daughters scoliosis earlier we probably would have gone with a night brace like yourself and Sharon. It seems like a reasonable compromise between being proactive and not being too intrusive on a childhood.

I know we are not out of the woods. Entering adulthood with a curve in the high 30's is not a great thing. Perhaps it bought some time to hope for even more advances in surgical techniques should it come to that.

Snoopy
08-28-2009, 06:05 PM
Mary Lou,

Your last point haunts me.

Sorry, I didn't mean to haunt you. I think we are both on the same page with this issue.

How fast did Jamie's curve move? Based on your comment, I'm guessing faster than the average testimonial here.

Wow! Your girls' curves moved quicker than Jamie's! Jamie's curve progressed about a degree per month AFTER she was skeletally mature.

Willow's curve was stable for 6 months prior to the brace and then moved 8* while wearing the brace nightly. Again, I don't recall another testimonial like that. Willow's curve moved between 3-4 degrees a month over the last 6 months (on average). That adds up fast.

When you see your girls' and Jamie's progression, it reminds me that it was time to do surgery sooner rather than later. At the time of her surgery, Jamie's Scoli curve was 46* and still going. Her Kyphosis was in the low 70's and still going.


He also doesn't think she has Marfans but the geneticist seems to think we should do yearly aortic monitoring for that.

Monitoring doesn't sound like a bad idea. I would compare it to the monitoring our doctor does on my youngest daughter who has a heart murmur. Better safe than sorry.

There is testing available for CMT (and Neurofibromotosis (sp?) which is another condition that Jamie might have) but there isn't a cure for either one. Jamie chose not to be tested. She wants to live her life as fullly as possible and not worry about or watch out for symptoms of either condition. She knows because of the strong family history, affecting mostly women in her dad's family, there's a chance she will develop CMT. She chooses not to dwell on that.

I am glad I involved Willow in all this. It was her decision to keep wearing the brace after I said I didn't think it would matter. I LOVE that she didn't just blindly follow my thoughts at that time just as an exercise in independent thinking. And it was her decision to stop wearing it when it stopped fitting. It gives me hope I have raised a skeptical, critical thinker. :)

I think you and I have both done a wonderful job raising our daughters! :D From the day Jamie was diagnosed, I told her this was her Scoliosis, but her dad and I would support her 100%. She was involved in all decisions as it was her body, not mine.

Mary Lou

Pooka1
08-28-2009, 09:52 PM
I think you and I have both done a wonderful job raising our daughters! :D From the day Jamie was diagnosed, I told her this was her Scoliosis, but her dad and I would support her 100%. She was involved in all decisions as it was her body, not mine.

Mary Lou

I love your approach to this. :D

And with regard to "haunting," I have been haunted by that thought for a long time, not just your recent mention. I agree that you and I are on the same page. I just keep imagining the let down when these kids wear a brace and still need surgery, if not right away then later in life. It has to be crushing. I wanted to avoid that for Willow.

Luckily, she knew the brace only had a small chance of working from the start. There was some confusion on this point with me because I wasn't able to be at that appointment... I thought her chances were better than that at first based on what my husband reported. I later came to the conclusion she couldn't have a good chance of the brace working based on my reading. Anyway, Willow agrees that it was worth a try and it didn't interfere unduly with her life. She wore it for a year. I doubt she would have worn any non-night-time brace at all given the circumstances.


Jamie's curve progressed about a degree per month AFTER she was skeletally mature.

Okay that is the fastest I have read in a skeletally mature person. Wow.

My girls were not skeletally mature. Willow is now at a Risser of 4. In the last six months she moved from 36 to 57. That's 3.5 degrees a month on average. And as I have mentioned several times, Savannah's curve moved 5 degrees a month (on average) for at least 5 months. Someone correct me if I'm wrong by that seems quite different from the typical AIS case, no?


There is testing available for CMT (and Neurofibromotosis (sp?) which is another condition that Jamie might have) but there isn't a cure for either one. Jamie chose not to be tested. She wants to live her life as fullly as possible and not worry about or watch out for symptoms of either condition. She knows because of the strong family history, affecting mostly women in her dad's family, there's a chance she will develop CMT. She chooses not to dwell on that.

That's a very rational way to proceed.

Because the genetic test for Marfans has a small false negative rate, even if they had the test and it was negative, we would still have to do the monitoring. So we don't do it. There are no false positives. If there was a good test with no false negatives, I would do it in the hopes of being able to stop the monitoring if negative.

I still can't get over Jamie's progression AFTER skeletally maturity and when the curve is still in the 40's.

Pooka1
08-28-2009, 09:53 PM
CD,

I am sorry about the hijacking of your wonderful news thread. :(

sharon

Dingo
08-28-2009, 10:14 PM
Concerned Dad

Congratulations on the great news about your daughter!

It sounds you can almost call this one done. If she didn't progress from 14 to 15 years old it seems even LESS likely that she'll progress from 15 to 16.

Who knows what advanced technologies will come along during her lifetime to correct her remaining curve.

Ballet Mom
08-30-2009, 01:40 PM
I second Dingo's remarks! :)

CD, I really do believe that it is not that many people who continue to progress in adulthood that are less than fifty degrees at maturity. I have posted a couple of studies in the past that attest to that fact. And it does sound like most of these surgeons continue to state that. Please keep in mind that this forum is a seriously unrepresentative sample of scoliosis patients.

I just wanted to make a comment about the study that keeps getting quoted, i.e:


"As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily."

I really don't think it should be considered that these patients have been treated unncessarily. It is not "unnecessary" just because someone didn't reach the surgical range. I think it is a great benefit that lots of these patients kept their Cobb angles from increasing in size. It probably helps in the longterm also, as the larger curves tend to increase more in adulthood than the smaller ones.

I am noticing people now stating that 70% of people are treated unnecessarily on this forum due to this, and I think that needs to be reevaluated. You know, repeat something enough and it becomes fact.

concerned dad
08-31-2009, 11:58 AM
Well, that 70% number comes from a pretty reputable study.

But I understand your point about surgery being the criteria to measure effectivness.

There are certainly two (or more) valid views on the topic.
Dr Dolan in her 2007 Metanalysis Paper expresses her views as follows:

Patients and families don’t generally fear curve progression; they fear curve progression to the point where surgery is the only option to improve or maintain an acceptable level of cosmesis. Therefore, it is not surprising that many opt for orthotic treatment without seriously considering the approach of watchful waiting advocated by Dickson and Weinstein in England56 and Goldberg et al57 in Ireland. Unfortunately, orthotic treatment is not necessarily benign in terms of the psychosocial and body image concerns it causes for many families. Therefore, we think that such a treatment decision should be based on the best evidence available concerning the rate of surgery with and without treatment, including the patient and treatment characteristics that contribute to higher rates of surgery. This evidence is an integral part of informed choice and should be available to clinicians, patients, and their parents as they contemplate bracing. To date, no systematic review has synthesized.

Sounds reasonable to me. The problem I have with her analysis is that she did not include the european studies where they used both bracing and physical therapy. That seems odd.

concerned dad
08-31-2009, 12:34 PM
CD, I really do believe that it is not that many people who continue to progress in adulthood that are less than fifty degrees at maturity.
<snip>
I think it is a great benefit that lots of these patients kept their Cobb angles from increasing in size.

This seems contradictory.

If you brace and stop a curve at 30 degrees that may otherwise go to 35 degrees? What is the "great benefit"?

A great benefit would be to stop a curve at 30 degrees that may otherwise progress to surgery (and Dolans paper says that there is a lack of evidence for this). Daniellsons paper (which came after Dolans paper) says there are only a few (10%) who benefit (using the surgery criteria).

I'm not saying it isnt beneficial to (in my example) stop a curve at 30 that might go to 35. But, the cost of that (possible) benefit is wearing a brace. I dont see that 5 degree improvement as a "great" benefit (relative to the treatment). Preventing a surgery.... that would, in my opinion, be a great and worthwhile benefit.

What we need is a way to determine WHO would benefit most. If there were a way to determine beforehand who that 10% was, well, that would be a big step forward. If 100% of the braced kids benefited, that would be great. Either through better/more effective braces, or through better screening criteria (DNA? or the results from the Braist study) to determine who is most suitable for bracing (I "guessed" my daughter wasnt suitable for bracing based on her skeletal maturity).

Help me see this because it seems central to the whole discussion about bracing.

Pooka1
08-31-2009, 03:33 PM
The problem I have with her analysis is that she did not include the european studies where they used both bracing and physical therapy. That seems odd.

What was the reason given for excluding brace+PT studies?

Pooka1
08-31-2009, 03:39 PM
What we need is a way to determine WHO would benefit most. If there were a way to determine beforehand who that 10% was, well, that would be a big step forward. If 100% of the braced kids benefited, that would be great. Either through better/more effective braces, or through better screening criteria (DNA? or the results from the Braist study) to determine who is most suitable for bracing (I "guessed" my daughter wasnt suitable for bracing based on her skeletal maturity).

CD, I think there are folks out there, many in fact, who will STILL brace even if you SHOW only a 10% efficacy rate.

And I strongly agree about screening. We need to determine who will NOT benefit from bracing. If it's most of the kids in the connective tissue disorder group then I question bracing these kids at all. And I definitely question waiting until 50* (as opposed to 40* or even lower) for fusion with this group if it can be shown that doing so always results in a longer fusion (as I strongly suspect).

Ballet Mom
08-31-2009, 04:06 PM
Hi CD,

Funny you should quote Dolan. I already disagree with her from the Braist study...heh. This is the woman that wants to move money from scoliosis treatment to treatment of obesity in children....right? From a real problem like scoliosis, to a problem of learning to eat correctly, eliminating soda and french fries from kids meals, and getting out and playing. :mad:

Anyhow, to answer your question, scoliosis is a progressive deformity. The deformity progresses with growth. The difference in the look of my daughter's back at different Cobb angles was shocking. I suspect any scoliosis sufferer and their parents would be thrilled to knock off six degrees or more off of their deformity (I believe six degrees was average according to that study, some are much greater -assuming that this study is repeatable.) And I believe my daughter's deformity wasn't nearly as pronounced as other kids are. I suspect every five degrees increase in curve creates a very noticeable change in the deformity of these kids.

These scoli kids get only one chance to prevent this deformity from increasing, which is during their growth...other than surgery. I can't imagine anyone in the healing profession not giving them the chance to minimize it. If people think bracing is not benign, do they think that major spinal surgery is benign? Do they think living with a greater deformity is easier psychologically that never made it to the surgical level, than living with a smaller, less noticable deformity? I don't see anything benign about scoliosis at all. It seems to be a matter of making the least worst decision possible...I think someone on this forum some time ago mentioned needing the wisdom of Solomon. Isn't that the truth. :(

I agree that tests that could predict if someone was going to progress would be a major breakthrough. Unfortunately, I worry that this will let lots of kids slide through the cracks that wouldn't have before. For example, if the genetic test is actually testing for something like hyperextended joints, rather than progression of the scoliosis. Hopefully, that blood test that Saint-Justine's hospital has come up with can accurately predict those who will progress...all of them, not just most of them.

Anyhow, that's my feeling, I feel terribly sorry for the kids in Ireland that aren't given any bracing...and look at the mess they have now with the number of kids needing surgery and lots of them not getting it. Perhaps their studies are wrong and need to be re-evaluated. Who knows. And I feel terribly sorry for the kids that aren't prescribed a brace by their orthopedic surgeons here in the USA at 25 degrees (even though I believe parents should be given the option to brace at a progressing twenty degree curve).

Ballet Mom
08-31-2009, 04:15 PM
Pooka,



If it's most of the kids in the connective tissue disorder group then I question bracing these kids at all.

Unfortunately, your daughter would have been braced anyway (with a different doctor), as she has run the gamut of tests for Marfan's if I remember correctly, and your daughter's doctors still do not believe she has it. We can all certainly wish there were better ways to diagnose possible borderline cases, but the testing is not there at this point. The best that could be done in such a case is give you the option to brace or not.

Ballet Mom
08-31-2009, 08:16 PM
Here are a couple of interesting letters to the editor of the American Family Physician from January 1, 2003. Note that the first one has the team so well-known by all of us from the Braist trial. The second one is a letter that receives kudos from this aforementioned team and is submitted by K. Allen Greiner, a doctor in family medicine and also has a degree in Public Health - like Lori Dolan. They are the second and third letters listed.

http://www.aafp.org/afp/20030101/letters.html

Here's a telling quote from him:


These facts must be faced as new cohort data are made available and show that most of the interventions performed on patients with idiopathic scoliosis are making a cosmetic difference rather than a physiologic difference.

So basically, these health professionals really don't care that the braces are making a cosmetic difference in the braced patients.

Notice that both this doctor and Lori Dolan have graduated with degrees in Public Health which is the equivalent to a Masters in Business (MBA) degree for the health field. So basically we have two trained bean counters who would rather not have the medical field pay for cosmetic bracing for scoliosis patients...even though ten percent more would require surgery according to CD's posted study. Just as I thought... it's the bean counters at work. :mad:

Pooka1
08-31-2009, 09:05 PM
As the parent of a son with scoliosis, I absolutely understand the heat about randomized trials. As a researcher, I also absolutely understand their importance. I don't have much light to shine either way on that subject. But I did want to de-vilify the lowly MPH :)

Oh bean counters always say that! ;)

Wow. I'm so glad to know we have a MPH here who has expertise in experimental design. I wish you were around a while ago when us little lay bunnies were trying to sort out some of the bracing literature.

Please stick around. Pretty please. :)

Ballet Mom
09-01-2009, 03:02 PM
Sorry hdugger, I didn't mean to tar all the Public Health graduates out there. I've always heard that the MPH was the equivalent of the MBA and MBAs are known for being ruthless beancounter costcutters...heh. ;)

However, here's another letter to the scientific journal Pediatrics from June 2008. These letter writers are from the department of public health in Rotterdam! Here's a clip from their letter:


Richards et al mention that most studies have concluded that brace treatment is effective. However, they did not mention a number of studies that have raised doubt on its effectiveness. Dolan and Weinstein recently published a systematic review of clinical data concerning surgical rates. The pooled surgical rate was 23% after bracing and 22% after observation. They concluded that this provided no evidence to recommend bracing over observation, which means that one of the most important conditions (ie, effective early treatment) before a screening program can be justified has not been met.

http://pediatrics.aappublications.org/cgi/content/full/121/6/1297

I have to conclude that Dolan and Weinstein are acting as beancounters. Really, how dare they decide that it is okay for all these kids to live with an increased deformity just because a mere 10 percent more kids will progress to surgery, according to that Swedish study? This is just not the same as a nose job or a boob job that insurance companies rightly deny paying for. It is a justified medical treatment that ranks right up there with all the other pediatric conditions that are treated.

It also sounds to me that part of the reason for this study is to save on screening costs, let alone bracing costs, and yet, this study only looks at the Boston brace. So, if anybody uses the outcome of this study, which is apparently based on surgical rates only and not cosmetic results, to eliminate screening in schools to save money, they are causing children to not be screened for any of the other braces out there too. I am really furious about this. I'm so angry, I'm about ready to look into legal remedies should these people be successful in their campaign to not treat and not screen these kids for scoliosis. They can talk about equipoise all they want, what they're doing is unethical....and they are definitely acting as beancounters.

Pooka1
09-01-2009, 04:23 PM
I have made this point before...

There are folks just in this minuscule sand box who have surgery on single curves <50* and those who have double majors curves in the 60's* who do not have surgery.

It can't be defended as a robust endpoint.

Hitting or exceeding 50* seems far more robust.

Pooka1
09-01-2009, 04:47 PM
See? This is why I at least need the input of an epidemiologist. :)

In my nascent, embryonic, inchoate, sophomoric :) forays into the medical literature, I have concluded it is far harder to do a good study in this field than it is in other scientific fields.

Also, you can't get an uncontrolled study published in my field whereas you can find uncontrolled studies still being published in medicine.

Controls... not just a good idea. ;)

Ballet Mom
09-05-2009, 09:35 PM
Hi BalletMom,

Have you seen the whole study from Dolan and Weinstein? In their abstract (http://www.ncbi.nlm.nih.gov/pubmed/17728687?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum) they mention a review of other endpoints "Critical analysis of the studies evaluating bracing in AIS yields limited evidence concerning the effect of TLSOs on curve progression, rate of surgery, and the burden of suffering associated with AIS." That suggests that they looked at the other endpoints but didn't see much information in the available articles. I'd like to see what that review of the literature turned up, and why they ended up focusing on surgery alone.

Hi hdugger,

I have downloaded an article called "Professional Opinion Concerning the Effectiveness of Bracing Relative to Observation in Adolescent Idiopathic Scoliosis" by Dolan and Weinstein et al. Here's a pertinent quote:


It has been suggested that progression to surgery
indicates the ultimate failure of bracing treatment.1 The key
question of any future study of bracing, randomized or not,
must be "How many patients avoided surgery because of
bracing treatment?"

The download can be found here:

http://braiststudy.com/files/folders/public/entry6.aspx

How did they decide to just ignore the increased deformity in these kids? I read about the hospital in Dublin Ireland also that decided not to brace kids in 1991, and they said basically the same thing...that surgery must be the standard to decide whether bracing is effective. I must humbly disagree. I can think of all sorts of ways to save the medical field money if we just decide to stop treating them because they're cosmetic...cleft lip, any deformity that won't kill a kid... oh what a great return to the dark ages this could be. How lovely. But terribly cost effective and efficient.

Ballet Mom
09-06-2009, 09:55 PM
hdugger, here is the thread you are interested in.

http://www.scoliosis-support.org/showthread.php?t=6954

This quote is quite interesting from Lori Dolan:


we are indeed looking at digital bone age - we just didn't use it as an inclusion criteria. All subjects in BrAIST have a left hand film at each visit.

According to the Braist study, these additional x-rays are not a safety issue, so, there should be no problem with all of these orthopedists using left hand x-rays to determine skeletal maturity for these scoli kids when they come in for diagnosis and are post-menarchal. Glad to know that everyone was worrying about x-ray exposure for nothing.

concerned dad
09-15-2009, 03:14 PM
According to the Braist study, these additional x-rays are not a safety issue, so, there should be no problem with all of these orthopedists using left hand x-rays to determine skeletal maturity for these scoli kids when they come in for diagnosis and are post-menarchal. Glad to know that everyone was worrying about x-ray exposure for nothing.


Been away for a while.
Balletmom, I'm not sure I understand what you're saying here.

It would be great to avoid all xrays all together, but a hand xray seems to have less risk than a full spine xray. I mean, isnt the main concern the radiation exposure to the thyroid, breast and ovaries?

I recall reading one of the arguments in support of hand xrays for age assessment was that it had the potential to reduce exposure. (why image down to the illiac crest if you dont need to?)

But risk is risk and it is all a balancing act. The risk of a hand xray to reduce the risk of bracing "for nothing" (in the event of skeletal maturity) seems to out weigh the risk of the radiation exposure ot the hand.

Ballet Mom
09-15-2009, 03:39 PM
Hi CD! Nice to see you back.

I think the reduction in x-ray exposure is achieved by not taking the additional hand x-ray at the visit. The surgeons will definitely take the full-spine x-ray in order to see what is going on with the spine. I think they have avoided taking the hand x-ray in addition to the full-spine x-ray in order to avoid the additional radiation exposure, since they can see approximately what is going on with the Risser score. If, however, these digital x-rays are now so safe that the Braist researchers can do both a full-spine x-ray and the hand x-ray at ever visit, it seems to me that they are safe enough for other doctors to also use to determine skeletal maturity more accurately. Maybe like Braist is doing....on every visit if necessary, to let kids out of their braces earlier.

concerned dad
09-15-2009, 03:57 PM
It is interesting to note that, even though my daughter's doctor is a big advocate of hand xrays to determine skeletal maturity, at our recent visit he did not give her a hand xray (just a spine xray).
I asked him why and he said that it was unnecessary since he knew her skeletal maturity from her previous hand xray.
I dont know if he was limiting radiation exposure or limiting costs, maybe both. But after thinking about it it makes sense.

I just reread the Equipoise paper (prompted by your and hdugger's comments). I still think the Braist study is worthwhile to do but I have to admit I am bothered by both

the exclusion of european studies that employed excercise and bracing in the metanalysis paper and
the point hdugger made about the uniformity of opinion regarding increased perceived risk (albeit small in some groups) in all profiles
.

Ballet Mom
09-15-2009, 04:23 PM
It is interesting to note that, even though my daughter's doctor is a big advocate of hand xrays to determine skeletal maturity, at our recent visit he did not give her a hand xray (just a spine xray).

I do think it's very interesting that Braist is going to do the hand x-ray at every visit, I would still not allow my daughter to be exposed to that additional radiation (at every vist), even though it's less radiation than with the older machines.

And here's a quote from Lori Dolan herself regarding the uniformity of opinion off of the Scoliosis Support thread:


You're correct about the equipoise paper - we did see agreement in outcomes/benefits of bracing for most presentations including post-menarchal girls.

So she admits that everyone agrees with the outcomes/benefits of bracing, but they're not going to brace the kids anyway.....astonishing.

I agree about the exercise and bracing you mention. With the results my daughter has had, I believe the right kind of exercise, whether ballet or torso rotational, seems to be a key ingredient for success. And additionally, everything I read shows that ballet dancers show their scoliosis much less than non-ballet kids. I think those studies to help kids cosmetically would be very valuable.

concerned dad
09-26-2009, 02:18 PM
And here's a quote from Lori Dolan herself regarding the uniformity of opinion off of the Scoliosis Support thread:


You're correct about the equipoise paper - we did see agreement in outcomes/benefits of bracing for most presentations including post-menarchal girls.

So she admits that everyone agrees with the outcomes/benefits of bracing, but they're not going to brace the kids anyway.....astonishing.



I think you are misinterpreting what she said.
They agreement they saw in post-menarchal girls was that bracing would have little effect.

So, what is astonishing to me is not that "they're NOT going to brace the kids anyway". It is astonishing that they ARE going to brace those kids anyway.

Boy, that doesnt read very well. Hope you know what I'm trying to say.

The point is, the only thing they saw agreement with was for post menarchal girls. The agreement was that bracing would have little effect. They are randomly assigning some of these kids to be braced anyway. That is what I may have an issue with, you seem to have an issue that they are not bracing some of these post menarchal girls.

So, you and I are both astonished, but for polar different reasons. But I am guessing that you misunderstood just what the "agreement" amongst the survey respondents was regarding post menarchal girls. Or maybe I misunderstood something.

I think she would have been more clear if she said
You're correct about the equipoise paper - we did see agreement in outcomes/benefits of bracing for only those presentations including post-menarchal girls. (with the bold text my substitution)

I think her use of the word "including" preceeded by the words "we did see agreement in outcomes/benefits of bracing" makes it easy to interpret that they saw agreement in benefits of bracing for most presentations. Reread the paper and you will see that the only thing they saw agreement on was for post menarchal girls.

concerned dad
09-26-2009, 03:03 PM
text from the paper
According to this definition, there was clinical agreement on only 4 of the 12 profiles, all of which proposed a small RR due to bracing in postmenarcheal patients. These agreements are highlighted in Table 4. More than 80% of the experts indicated that bracing would have a small effect on postmenarcheal patients with thoracic curves (for both small and large curves), postmenarcheal patients with small thoracolumbar/lumbar curves, and postmenarcheal patients with small double major curves. The respondents were very close to agreement (77% and 79%) that bracing would have only a small effect on postmenarcheal patients with either large thoracolumbar/lumber curves or double major curves.

Ballet Mom
09-26-2009, 07:37 PM
I think you are misinterpreting what she said.
They agreement they saw in post-menarchal girls was that bracing would have little effect.

The point is, the only thing they saw agreement with was for post menarchal girls. The agreement was that bracing would have little effect. They are randomly assigning some of these kids to be braced anyway. That is what I may have an issue with, you seem to have an issue that they are not bracing some of these post menarchal girls.



I still see red when Braist and Lori Dolan gets mentioned which is why I was speed reading this thread when I posted that comment. I probably picked the wrong comment to post from, I was thinking more of hdugger's comment i.e.
but all of the variability was in the same direction. No matter what the presentation, they generally thought that there was a lower risk of progression with bracing then without. Variability in *how much* risk there is of progression is very different from variability about *whether or not there is* risk. I may at some point get back to looking at that study, but frankly, it simply doesn't interest me and actually infuriates me.

Note: my daughter has grown over an inch since menarche, I'm sure she would have progressed considerably during that time if she wasn't in a brace (unless antibiotics are perhaps helping her scoliosis.....who knows). Why would you find it astonishing that they would brace those kids? Someone just posted that their daughter had grown a lot....two years post menarche!

Please let me know what you think about the research subjects getting multiple extra hand x-rays during these studies? I also noticed a study that was done, I believe at Scottish Rite, that also took these extra hand x-rays at every visit, but can't find it right now. Either it's safe for all these "subjects" and therefore, all other scoliosis patients, or if not, it shouldn't be being done on these subjects either.

Also, I didn't see this comment of yours when I was speed reading , sorry.


I recall reading one of the arguments in support of hand xrays for age assessment was that it had the potential to reduce exposure. (why image down to the illiac crest if you dont need to?)

I don't know about you, but I can't imagine the caliber of x-ray techs we've seen, being able to image down to a specific point and get the entire spine too. They don't have x-ray vision, and they certainly aren't the brightest bulbs on the block and they can't even get shields into the x-ray...perhaps deliberately, who knows. I think you give them too much credit.

concerned dad
09-27-2009, 02:58 PM
Why would you find it astonishing that they would brace those kids? Someone just posted that their daughter had grown a lot....two years post menarche!

It is astonishing to me because the consensus was that it would have little beneficial effect. I mean, they demonstrated equipoise on that issue and braced anyway. Maybe "astonishing" wasnt the best word to use, I just took your lead while trying to make my point. But I certainly would not have been "astonished" if they did NOT brace them as that was basically the concensus opinion.

Regarding the recent posting from someone whose daughter grew 2 inches post menarche: well, that tells me that perhaps menarchal status may not be the best indicator of remaining skeletal growth. But I dont think the issue is so much remaining growth as it is the timing of the curve acceleration stage.

Dr. Dolans response to my question about her equipoise paper (from scoliosis-support.org) was:

You're correct about the equipoise paper - we did see agreement in outcomes/benefits of bracing for most presentations including post-menarchal girls. So, this tells us that the community tends to agree that the benefits of bracing are lower in post-menarchal girls. But we still don't know if their estimates were correct, only that they were in agreement. Additionally, girls at <1 year post-menarche are frequently indicated for bracing in the US. Therefore, we wanted to include these girls in BrAIST. The equipoise study was only one piece of evidence we used to make our case for the ethics of this trial. We can talk some more about this later if you're still interested.

We wanted to base the inclusion criteria for BrAIST on current indications. When we were planning this study, Jim Sanders hadn't yet finished the analysis of his digital bone age data. Dr. Sanders is also an investigator in BrAIST, and we are indeed looking at digital bone age - we just didn't use it as an inclusion criteria. All subjects in BrAIST have a left hand film at each visit.



Please let me know what you think about the research subjects getting multiple extra hand x-rays during these studies? I also noticed a study that was done, I believe at Scottish Rite, that also took these extra hand x-rays at every visit, but can't find it right now. Either it's safe for all these "subjects" and therefore, all other scoliosis patients, or if not, it shouldn't be being done on these subjects either.


It is my understanding that xray exposure from hand xrays is not a big deal.
I think the concern is much more (still very small) for exposure of the breasts and reproductive organs. The breast exposure is mitigated by taking posteria Anterior films (back to front) and the reproductive organ exposure is mitigated by use of shields (although, as you point out, this is often done haphazardly).

Pooka1
09-27-2009, 03:49 PM
There might be some confusion on the "maturity" and "post menarche" thing.

I know I heard or read or somehow got the idea that growth stops two years AFTER menarche, not at the beginning. That would explain why bracing is even routinely done after menarche but it would not explain bracing two years after that.

So it was strange to me to see there was agreement on low efficacy of bracing post menarche. When I read that I assumed they meant 2 years AFTER menarche but of course I have no idea what they were thinking.

Ballet Mom
09-27-2009, 04:09 PM
It is my understanding that xray exposure from hand xrays is not a big deal.
I think the concern is much more (still very small) for exposure of the breasts and reproductive organs. The breast exposure is mitigated by taking posteria Anterior films (back to front) and the reproductive organ exposure is mitigated by use of shields (although, as you point out, this is often done haphazardly).

I also think with the digital x-rays that it can't be that great a concern or much of a cost, seeing as they're digital, so why aren't these orthopedic docs moving to hand x-rays when girls are post-menarchal for at least one hand x-ray? I think it seems pretty clear that menarche isn't a good indicator of skeletal maturity and yet it seems these doctors use it quite predictably. It seems to me it could save a lot of kids from bracing or being able to discontinue the brace earlier than what would be normal, and save some of these kids who are not being braced due to menarchal status and then continue to grow and progress.

Also, my daughter's x-ray techs can't even get the x-rays taken with her back to the front to protect her breasts. It really is irritating when it does state quite clearly in the procedural guide for scoliosis x-ray procedures that they should be taken back to front. :mad:

concerned dad
09-27-2009, 04:57 PM
so why aren't these orthopedic docs moving to hand x-rays when girls are post-menarchal for at least one hand x-ray? I think it seems pretty clear that menarche isn't a good indicator of skeletal maturity and yet it seems these doctors use it quite predictably.

Well, Sanders only recently came out with the research documenting the superiority of hand xrays in assessing skeletal maturity. Maybe it will take a while to catch on.
In 2008 he published a paper offering a Simplified Classification System
In his paper he says (as usual, bolded emphasis is mine):
Both the Tanner-Whitehouse-III RUS score, which is based on the radiographic appearance of the epiphyses of the distal part of the radius, the distal part of the ulna, and small bones of the hand, and the digital skeletal age skeletal maturity scoring system, which is based on just the metacarpals and phalanges, correlate highly with the curve acceleration phase in girls with idiopathic scoliosis. However, these systems require an atlas and access to the scoring system, making their use impractical in a busy clinical setting. We sought to develop a simplified system that would correlate highly with scoliosis behavior but that would also be rapid and reliable for clinical practice.


Maybe it is just tough to teach an old dog new tricks.

he goes on to elaborate in the paper

Previous work identified the DSA scores from the Tanner- Whitehouse-III RUS method as the maturity indicator most closely correlated with curve behavior in a cohort of girls with idiopathic scoliosis. The DSA score, however, is cumbersome to obtain and is more appropriate for a research study than for clinical use unless reliable, rapid computerized measurements can be obtained, as suggested by several investigators 8-11. Because of these limitations, we sought to develop a reliable but rapid skeletal maturity assessment system based on the findings used to determine the DSA score.

Ballet Mom
09-27-2009, 05:13 PM
Thanks CD, that explains it! I had no idea we were at the forefront of the research curve...hee hee :D